This is our record of the short life of our son, Samuel, and the days following. Samuel was born on August 1, 2009 with several heart defects and very sick lungs. He died on August 31, 2009. August was a holy month for us,and we are so grateful for the days we had with our third son. We are convinced that our God, who carried us through each moment, is GOOD and TRUSTWORTHY. We are learning to praise Him in new ways and depend on Him more fully as we grieve Samuel.

Friday, August 21, 2009

More Complications

Our little Samuel continues to swell and hold water. As a result they have tried a couple of things to get him to process and pee those fluids. One of those things is a urinary catheter. Another thing that they are doing is putting him back on Dopamine which is a medicine for blood pressure. At a really low dose it actually relaxes the veins around the kidneys… which we found out today, are the newest organ to be concerned about. The doctors are pretty concerned about his renal function. This felt like a pretty big blow to Kathryn and I. Another struggling organ!?! Please, pray that his kidneys are able to start functioning properly and help him pass his fluids. If they do not, they may have to put him on dialysis.

His lung x rays were only very slightly improved from yesterday. Obviously, we were hoping for better. Also, they found an infection in the culture from the bronchoscope yesterday. Thankfully, he was already on some antibiotics because of a previous test. It is likely that this infection is contributing to the fluid in his lungs, so hopefully they will lick that pretty soon. All of that said, his stats and blood gas numbers have been at least acceptable for most of the day.

Samuel has gone through a few IV lines in his short life. They don’t last long, especially in his tiny veins. Additionally, his hands and feet are so swollen from retaining fluid that all of their pricks to find another one have been fruitless. He is now on so many meds that some of them are incompatible and cannot be fed through the same line. For the last day or two they have occasionally had to stop the meds going through the line to administer others. As a result of that, they have just put a femoral vein (central) line in. A moment ago the nurse was flustered because after an hour of trying to get that line up and running, they wondered if the line is actually the artery and not the vein. Dr. Das used a clever trick (using an echocardiogram and saline solution w/ bubbles) to figure out that it is, in fact, in the wrong place. So the poor kid is going to have to get pricked and poked AGAIN!

Pat, Kathryn’s mom, came down to the hospital for 3 hours today while K and I got a couple additional hours with the boys. However, because of several consecutive sterile procedures in the CICU, she never got in to see Samuel. This was very disappointing and frustrating.

Samuel opened his eyes this afternoon. It was the first time we’d seen his eyes in a week and a half (since they first put in the paralytic). What a gift! It made me realize what a hard road this has been for us when I found myself craving simple eye contact with him. Interestingly, it also stirred up some heartache for both Kathryn and I. We found ourselves wondering if he is afraid, if he is in pain, if he is anxious. As you can imagine, these wonderings brought tears to our eyes. I am so grateful that I have my wife/best friend to go through this with! It would be unbearable otherwise.

Please keep praying. The list of medical requests seems to grow:- THAT GOD WOULD HEAL SAMUEL!!!- that his kidneys would function well and that we’d be able to avoid dialysis- that the infection in his lungs heals- that the fluid in his lungs goes and stays away- that his pulmonary hypertension would continue to heal- that his liver would be able process the billirubin (I forgot to mention that these counts have been going up again for several days in a row now.)- that his heart would heal or at least be able to function with his several defects

In addition to medical requests, we have continued to meet other parents with kids on the CICU. We are beginning to pray that God would heal the whole floor. Wouldn’t that be a miracle?! May it come to be!

Tom and I are praying for continued strength for your two and complete healing for Samuel. The kidneys were an unexpected blow I'm sure. Meds, infection, and healthy heart and lung function are at the top of our prayer list until you tell us otherwise. I feel like Samuel is already being used to further God's Kingdom...he's a gift in more ways than one!

You two are amazing stewards - please know that you are doing so much for other people out here just to witness your journey with Samuel. I find that I am drawn to start my days with your blog update followed by prayers for your little Samuel, may all of his prayers start to come true soon I hope. You are not alone, there are so many of us out here lifting you up in prayer - thank you for all that you are doing and thank you for all of the updates.

For the past few days, I've been this thought about Samuel I've been trying to fomulate. When someone like Samuel enters your life, even from a distance (in my case), the love you feel for him also magnifies your feelings for other loved ones with special intensity. And then I see such a broad network of people caring, loving, and praying for Samuel and your family. As tiny and vulnerable as Samuel is, he has had quite an effect on all of us. My heart goes out to you all, and I am still sending my hopes and prayers for Samuel, your family, and the entire floor.